Study Finds That Believing and Valuing the Patient Must Be Central Part of Fibromyalgia Therapy

A meta-ethnography of patients’ experience of chronic non-malignant musculoskeletal pain

By F. Toye, et al.

Abstract:

Background: The alleviation of pain is a key aim of health care yet pain can often remain a puzzle as it is not always explained by a specific pathology. Musculoskeletal (MSK) pain is one of the most predominant kinds of chronic pain and its prevalence is increasing. One of the aims of qualitative research in health care is to understand the experience of illness, and make sense of the complex processes involved. However, the proliferation of qualitative studies can make it difficult to use this knowledge. There has been no attempt to systematically review and integrate the findings of qualitative research in order to increase our understanding of chronic MSK pain. A synthesis of qualitative research would help us to understand what it is like to have chronic MSK pain. Specifically, it would help us understand peoples’ experience of health care with the aim of improving it.

Aim: The aim of this study was to increase our understanding of patients’ experience of chronic non-malignant MSK pain; utilise existing research knowledge to improve understanding and, thus, best practice in patient care; and contribute to the development of methods for qualitative research synthesis.

Methods: We used the methods of meta-ethnography, which aim to develop concepts that help us to understand a particular experience, by synthesising research findings. We searched six electronic bibliographic databases (including MEDLINE, EMBASE and PsycINFO) and included studies up until the final search in February 2012. We also hand-searched particular journals known to report qualitative studies and searched reference lists of all relevant qualitative studies for further potential studies. We appraised each study to decide whether or not to include it. The full texts of 321 potentially relevant studies were screened, of which 77 qualitative studies that explored adults’ experience of chronic non-malignant MSK pain were included. Twenty-eight of these studies explored the experience of fibromyalgia.

Results: Our findings revealed the new concept of an adversarial struggle that explains the experience of people with chronic MSK pain. This included the struggle to affirm self and construct self over time; find an explanation for pain; negotiate the health-care system while feeling compelled to stay in it; be valued and believed; and find the right balance between sick/well and hiding/showing pain. In spite of this struggle, our model showed that some people were able to move forward alongside their pain by listening to their body rather than fighting it; letting go of the old self and finding a new self; becoming part of a community and not feeling like the only one; telling others about pain and redefining relationships; realising that pain is here to stay rather than focusing on diagnosis and cure; and becoming the expert and making choices. We offer unique methodological innovations for meta-ethnography, which allowed us to develop a conceptual model that is grounded in 77 original studies. In particular, we describe a, collaborative approach to interpreting the primary studies.

Conclusion: Our model helps us to understand the experience of people with chronic MSK pain as a constant adversarial struggle. This may distinguish it from other types of pain. This study opens up possibilities for therapies that aim to help a person to move forward alongside pain. Our findings call on us to challenge some of the cultural notions about illness, in particular the expectation of achieving a diagnosis and cure. Cultural expectations are deep-rooted and can deeply affect the experience of pain. We therefore should incorporate cultural categories into our understanding of pain. Not feeling believed can have an impact on a person’s participation in everyday life. The qualitative studies in this meta-ethnography revealed that people with chronic MSK pain still do not feel believed. This has clear implications for clinical practice. Our model suggests that central to the relationship between patient and practitioner is the recognition of the patient as a person whose life has been deeply changed by pain. Listening to a person’s narratives can help us to understand the impact of pain. Our model suggests that feeling valued is not simply an adjunct to the therapy, but central to it. Further conceptual syntheses would help us make qualitative research accessible to a wider relevant audience. Further primary qualitative research focusing on reconciling acceptance with moving forward with pain might help us to further understand the experience of pain. Our study highlights the need for research to explore educational strategies aimed at improving patients’ and clinicians’ experience of care.